The diagnosis came last April: Angelman syndrome , we read in the doctors' report. «My daughter doesn't speak and won't speak, to date she doesn't walk and I don't know if she ever will. Then there are other problems such as severe mental retardation, epilepsy, sialorrhea, insomnia and other disorders." The story is told by a reader of L'Unione Sarda, who emigrated to Piedmont with his family.
The father's heart finds no peace at the thought of the uncertain future that awaits his little girl, affected by the rare genetic disease, unknown to him until recently. " On a healthcare level they don't give us anything other than an hour a week of therapy, even though she is 100% disabled with 104." Then in the darkness came a glimmer of hope : "A non-profit organization has offered to pay for part of the therapies we support ourselves, I'll help out as best I can by organizing charity sales."
There are a total of 15 members of the association and «so far it helps 3 children. It's called "Simone the lion" and takes its name from a child who, suffering from this syndrome, continues to face life with determination and courage." «The hope – continues the reader – is that more and more people can learn about this reality, so that the Angelman children can live better and better»
(Unioneonline/vf)
